PDA

View Full Version : Trigeminal Neuralgia-Whats Next?



rob
07-30-2009, 07:41 AM
Hi Everyone,

As many of you know, I had something happen to me earlier this week that was easily the most painful experience of my life. I have SLE, and I learned just over 1 year ago that I also have MS. The other day I had a bright flash of light in my right eye, and a sensation of electric shock and burning through my jaw, face, head, and down into my neck and upper arms. I collapsed, got sick to my stomach, and found myself begging for someone, or something to make the pain stop. I cannot even begin to explain just how intense the pain was.

My Neurologist says he's 99% sure that what happened to me was a bout of Trigeminal Neuralgia as a result of myelin damage from MS, and after reading everything I could find on the condition, I am inclined to agree with him. It is a condition that occurs in only about 4% of people with MS. Apparently, a bout of TN it is considered by the medical community to be the single most painful condition/event a person can experience. And, it's considered a "suicide disease", gee, how uplifting!

One of the effects this condition causes, is a fear of it happening again. I have been taking a mild sedative, and it has helped me calm a bit and I've been trying to wrap my head around this new problem. There are meds that can help, and I will be discussing them with my neurologist tomorrow. In cases that don't respond to meds, there is a surgical procedure that is fairly effective, but, it involves neurosurgery on the Trigeminal Nerve which is located deep down near the brain stem-eeek! Two days ago, the thought of brain surgery would have been absolutely terrifying. But I have to be honest, if I was presented with the choice right now of another bout of TN, or brain surgery, I'd go with the surgery no questions asked. What I experienced the other day was so terrible, that I would rather have frigging brain surgery than go through that much pain again. It's insane, but I'm comforted by the fact that there are different options for treating this. I'm telling myself that the meds will work. Can't think too far ahead.

Anyway, I know people here have been worried. I want you all to know that my sister who is an RN is staying with me for the next few days. If I have another bout, she'll take me to the hospital where they will give me IV pain meds until it passes-there are no pain meds that you can be prescribed to take at home that will work. I'm avoiding steps, and carrying things like hot coffee in case it happens and I inevitably hit the floor. So, I have help here if I need it, I'm seeing my neuro for a follow-up tomorrow, and I have options for treating this. That's the best I can expect from this situation at this point, and I'm OK with it.

For everyone here who has given me comfort, understanding, and a shoulder to lean on, I want to say thank you. I could not face this without the support I recieve here from all of you.

Rob

widebody
07-30-2009, 08:33 AM
Man o man, Rob...I feel for you. I'm really sorry to hear about this latest development. It is encouraging that there's a treatment available. As my granddad used to say, 'you don't need brain surgeons or lawyers very often, so when you do, get good ones.' :)

Best of luck and keep us posted.

BTW - do you have any interest in an assistance dog? I worked with an org years ago to provide a dog to a farmer who was disabled in a motorcycle accident. I remember the founder of the training center that provided the dog had MS, and had a wonderful Great Pyrennes assistance dog. He was roughly the size of a small country, and helped her with all manner of things, including just providing (silent) companionship..

crmj1183
07-30-2009, 08:53 AM
Hey Rob,

I havent looged in, in a day or two.... First, Im glad you're okay, phew! TN, huh? Im so sorry you're going through this and Im even more freightened that you were alone the first time this occurred. Im glad your sis is staying with you for a couple of days. Also, its a relief to know that you have options in this type of disease. Im glad you're optimistic and positive thats the type of attitude that will pull you through this. Rob you're definitely in my prayers. Keep me posted. Take it easy, real easy:yes:


your friend
Chriss

dassar RN
07-30-2009, 09:39 AM
Hi Rob,
I am soooo relieved to know that you are not by yourself and that your RN :yes: sister is with you ( I am being biased as an RN :cute:). Just wanted to let you know that you are in my thoughts and prayers. Hang in there Rob!!!


When things go wrong...

When things go wrong as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile but you have to sigh,
When care is pressing you down a bit
Rest if you must, but don't you quit.
Success is failure turned inside out,
The silver tint on the clouds of doubt,
And you can never tell how close you are,
It may be near when it seems afar.
So, stick to the fight when you're hardest hit
It's when things go wrong that you mustn't quit.

—Unknown

Just thought I would share this poem that has gotten me through some rough times with my illness and challenges of life.

:grouphug: Dassar RN

Oluwa
07-30-2009, 10:52 AM
I know...you are okay with it Rob..but I wanted to post this prayer. Couldn't hurt, eh?...Head hugs..Love.Oluwa

Dear Heavenly Father....

We remember before you all who are sick this day. Give them courage to live with their disease. Help them to face and overcome their fears. Be with them when they are alone or rejected. Comfort them when they are discouraged. And touch them with your healing Spirit. Thank you Dear Lord...Amen

Rastagirl
07-30-2009, 12:14 PM
You are in my thoughts and prayers today, Rob......today, tomorrow and always.

I'm relieved to know that your sister is with you for a few days...I was worrying sick about you being alone. Now I know you'll be well taken care of, won't be alone, and you'll be able to take it easy and lay low. Also a relief to know you'll have some companionship to help ease your fears....someone that's right there to talk to.

It deeply saddens me to know that you had to experience the worst pain imaginable....I am truly sorry you have suffered this experience.

After reading through what's going on...what you wrote about the options for treatment, I feel helpless in finding the right words to comfort....so I went to my church this morning, to our Prayer Chapel, and lit a candle for you.....and spent some time in prayer with God on your behalf.

I know you are not necessarily a believer, but I am.....and last night I remembered your past comment to me about my prayers for your Nephew when he was enduring the worst imaginable. My God listens to me....and answers my prayers. I am certainly not naive in believing that the answers will always be what I want, or what I ask for....but I prayed hard for your mind to be given a sense of peace about this, a protection from the fears, and for all things to be worked out for good for you. I truly believe that you will be led to the right treatment....the best care imaginable....and that things will work out for your ultimate good. You are not alone in this....

I'm just a PM away if you need anything....talk, vent, unload, cry, scream, cuss, kick a dog (just kidding on that one, only said it cuz I know you're a cat person and I know your feelings on dogs) ...and my offer to perform small errands around WHL in any way, is a standing one. Never hesitate to ask...nothing is too big...or too small.

You are dearly loved by your friends around here...and when you are suffering and dealing with yet more on your already heaped plate....we've got your back. :yup::yup:

Rest up today....veg on some more of those classic mafia movies, or a good Eagles concert. They always bring me peace, wonderful memories, and make me feel better. Wish I could get them to actually come to your house and play a personal concert right in your living room....is it big enough for their amps and mike stands?? If not, we could leave the couch and move the rest of the furniture outside for a day. I'll look around today...I think I've got Don Henley's cell # somewhere around here... :phone:

I'll be waiting to hear how things go tomorrow at your doctor appointment....

Take care of yourself, my fellow Pink Floyd buddy!

Love,

:cool2: Lori

kducks
07-30-2009, 12:16 PM
Wow, sorry to hear Rob but at least you know what's happening now. Brain surgery is scary but at least there is possible cure to help give you some relief. I hope you don't have any more episodes or that the meds will work for you and you don't have to go under the knife. Keeping you in my thoughts with fingers crossed!

ButterflyRN
07-30-2009, 01:00 PM
Rob,

I am so sorry to hear you had this episode. I am glad that your sister is there to help you though. I couldn't begin to imagine that type of pain. I will keep you in my thoughts and prayers and I hope that it doesn't happen again!

Keep us posted on what the doc says at the next appointment. I think an medical assistance would be a great idea if you are not allergic or have a dislike for dogs too! You know we are here for you so let us know if you need anything!

mountaindreamer
07-30-2009, 06:34 PM
hi rob,

thank goodness for your sister, i know her presence brings great comfort to you. PLEASE take care of yourself, take everything slowly, and follow drs. orders. Let us know how your appointment goes tomorrow. Where brain surgery prospects are frightening, they are not nearly are frightening as the possibility of having another bout with TN.

keep us posted, you know how much we all care for you.

SandyR
07-30-2009, 08:10 PM
Rob,
I am glad to hear you have a sister who is not only able to take care of you physically and emotionally, but with some medical knowledge as well.
Surgery scares me, but in your shoes, I think I might feel the same way. I am keeping you in my thoughts and prayers.
Sandy

rob
07-30-2009, 09:10 PM
Man o man, Rob...I feel for you. I'm really sorry to hear about this latest development. It is encouraging that there's a treatment available. As my granddad used to say, 'you don't need brain surgeons or lawyers very often, so when you do, get good ones.' :)

Best of luck and keep us posted.

BTW - do you have any interest in an assistance dog? I worked with an org years ago to provide a dog to a farmer who was disabled in a motorcycle accident. I remember the founder of the training center that provided the dog had MS, and had a wonderful Great Pyrennes assistance dog. He was roughly the size of a small country, and helped her with all manner of things, including just providing (silent) companionship..

Oh, I could not have an assistance dog, my three cats would get pissed and probably ambush me on the way to their food bowls. But, I thank you for the idea. They sound like a friend, when one needs that the most.

Thanks for the thought, and the idea

kim,l
07-31-2009, 02:45 AM
dear rob i am sorry you have gone through so much pain i hope you feel better soon it is bad enough coping with one disease let alone another be well my friend lots of hugs kiml

NoodleMom
07-31-2009, 05:43 AM
Oh Lord, Rob I am so sorry. I cannot even begin to fathom the intensity of that pain. I am praying for you. Its really all I can do. Im sorry that I cannot help in a more tangible way.

K

debbie-b
07-31-2009, 06:59 AM
Rob, dear friend,

You have been on my mind for days. All we can hope for, is that the doc can help you, in whatever way necessary. I hope you will never again have to endure this kind of pain.

Debbie

Angel Oliver
07-31-2009, 07:07 AM
Rob,

You know im always thinking of you and glad its eased for now n your sister is with you.Just rest and know we all care so much.

love n hug s Amanda.xxxxxxx

ButterflyRN
07-31-2009, 10:55 AM
Yes I would say your cats might be a little upset with a doggie around!

narrowboatnutter
08-01-2009, 08:08 AM
sorry to hear your news....ive been praying for you too...i noticed the theard a couple of days ago, but have hands issues so i banned myself from typing!!!

well you must be the most prayed for t/n man in the world by now lol....God will sort it out for you, Hes good like thats as He loves us all so much, whether we believe in Him or not!!!

My best friend has t/n....ive seen her go though an attack and i can say its such a hard illness to have, she was put on some meds that although hasnt taken it away, its reduced the attacks a huge amount and they are not so painful now....rather than curling up on the floor and pretty much blacking out from the pain, she is now able to sit though them, call for help and remain almost o.k till we get her down the doctoer where they pump her full of morhine to reduce the pain! i had another friend with it who went for the surgrey and she hasnt had an attack since and is now off her meds, i think my best friend is on the waiting list for the op as well!!!

hang on in there, there is alot they can do, and the treatments do help....in my best friend case she went from an attack every 2 weeks to an attack every 6 months...the main thng my friend needs is support though it all, after an attack it scares her so much she needs to talk it over with someone...and you know all about how scary it is!!! so do share with us or anyone how you feel .... if there any questions i can ask my friend for you, let me know and ill pass the message on...shes not on the net as she lives on a narrowboat, but i can be your go bewteen if you want :-)

p.s i have 3 cats and my best friend has 10...so we are all cool kitty cats peeps!!!

p.p.s i have no idea how the rolling on the floor man got there...but i like him!!!! :-)....hooray...ive worked out how to do a man action thing, i typed in a smiley face, how cool is that!!!

rob
08-01-2009, 08:43 AM
Hi Everyone,

Well, I had my Neuro appt yesterday. Bad news, and good news. I have several new active white matter lesions-my MS is getting worse. But, I've not had any more bouts of TN. I was started on a new med for me called Neurontin. Pretty common drug prescribed for people with neuropathic pain and MS. Does not seem to have any bad side effects at this point, but I just started it last night.

The most important thing for me is to not have another bout of TN, especially now that I'm taking something for it. If the med doesn't work, there are a couple of others I can try-or there's surgery. I don't want to even think about that possibility for now. I have faith that the med will work.

I also had a new round of evoked potentials tests done yesterday, but I won't have the results until next week. Not going to think about it any more until then.

Most of you probably know, I am a bit of an agnostic. I can't call myself an atheist, because I do want very much to believe in a higher power, even though right now, I don't. But I want to thank you all for your prayers. Something must be working, because I haven't had anther TN bout. I will take prayers, and help, anywhere I can get them. What's that saying-"There are no atheists in foxholes". When I collapsed the other day, I found myself begging that if there is a God, to please stop what's happening. I want to believe, but I'm still searching I guess. But, again, thank you all for your prayers.

I need to get caught up here, do some reading, and send a few PM's. I'm feeling OK today, just a bit tired. Sis went home, but I have my phone handy just in case. I hope everyone is having a good day, and doing OK.

Rob

jfal
08-01-2009, 08:53 AM
Neurontin seems to help block my pain also.

A quick question, have you ever had a CAT scan that showed an "anamoly"? Something the docs say was caused maybe by the machine? I ask becase I have one that shows 2 lateral "white fog" patches in both hemispheres of my brain. It only shows up in one cut of the CAT scan. They are all in agreement that it is not the patches typical of MS.

rob
08-01-2009, 08:56 AM
sorry to hear your news....ive been praying for you too...i noticed the theard a couple of days ago, but have hands issues so i banned myself from typing!!!

well you must be the most prayed for t/n man in the world by now lol....God will sort it out for you, Hes good like thats as He loves us all so much, whether we believe in Him or not!!!

My best friend has t/n....ive seen her go though an attack and i can say its such a hard illness to have, she was put on some meds that although hasnt taken it away, its reduced the attacks a huge amount and they are not so painful now....rather than curling up on the floor and pretty much blacking out from the pain, she is now able to sit though them, call for help and remain almost o.k till we get her down the doctoer where they pump her full of morhine to reduce the pain! i had another friend with it who went for the surgrey and she hasnt had an attack since and is now off her meds, i think my best friend is on the waiting list for the op as well!!!

hang on in there, there is alot they can do, and the treatments do help....in my best friend case she went from an attack every 2 weeks to an attack every 6 months...the main thng my friend needs is support though it all, after an attack it scares her so much she needs to talk it over with someone...and you know all about how scary it is!!! so do share with us or anyone how you feel .... if there any questions i can ask my friend for you, let me know and ill pass the message on...shes not on the net as she lives on a narrowboat, but i can be your go bewteen if you want :-)

p.s i have 3 cats and my best friend has 10...so we are all cool kitty cats peeps!!!

p.p.s i have no idea how the rolling on the floor man got there...but i like him!!!! :-)....hooray...ive worked out how to do a man action thing, i typed in a smiley face, how cool is that!!!


Hi,

I haven't talked to you in awhile. I see you've been back here for awhile now, but I need to get caught up on what's going on with you. I'm sorry your friend is dealing with TN, but I am very happy to hear the meds have helped her. The way you explained it is right on. I just crumpled to the floor and nearly blacked out-I wish I had. I could not believe the intensity, and the sudden nature of it. It s the most painful thing I've ever felt, and it would not stop. When it finally did, it stopped almost as suddenly as it started. I could feel it within 10 seconds or so, just shrink and go away. I must have layed there for an hour afterwards afraid to move, afraid it would come back. I had nightmares about it last night.

Please say hello to your friend for me. Tell her they have me taking Neurontin. I'd love to talk to her if she ever gets online.

How are you doing? I hope you are doing OK. I went out sailing a couple of weeks ago and saw an 80 foot blue whale, and a few sharks. Are you still living on your boat?

Well, I need to go get caught up here. I hope you are having a good day.

Rob

P.S. If you go to my profile page, and look at "Rob's Photo Album", you'll see some pictures of my cats.

rob
08-01-2009, 09:03 AM
Neurontin seems to help block my pain also.

A quick question, have you ever had a CAT scan that showed an "anamoly"? Something the docs say was caused maybe by the machine? I ask becase I have one that shows 2 lateral "white fog" patches in both hemispheres of my brain. It only shows up in one cut of the CAT scan. They are all in agreement that it is not the patches typical of MS.

No I have not. In fact, I haven't had a CAT scan since before I was diagnosed with MS. All I've had for imaging in the past year has been MRI's. Just so you know where I'm coming from, I was diagnosed with SLE nearly 6 years ago, and then MS just over one year ago. (Gee, aren't I special-NOT!)

Never knew there was such a thing as an "Overlapping Illness". Oh well. Anyway, I'm, not sure what the "anomaly" could be.

Rob

Angel Oliver
08-01-2009, 11:20 AM
You are special.x

Im so glad our little talks in our heads at night for you not to have 'that' pain again..is working. I am always thinking of you and hoping the new meds help and you begin to ease and not be afraid.We are all here to help you through this. Just rest,keep your phone on you at all times. So glad you have your cats for comfort n us on here n your family.

Love n hugs
Amanda.x

(can you tell i found the big letter button :) )xxxxxxx

lucky7
08-01-2009, 06:57 PM
Oh Rob im so glad things are going a bit better for you at least.:yes: Im so glad to hear that your sister is around to care for you as well. How sweet:cute: Im like you on the God issue,i DO want to believe BUT i have nothing to say "YEAH" or "NEAH" so i am more on the spiritual side of things. So i cant say a prayer BUT i can do for you what ive always done and that is to KEEP you in my THOUGHTS and my HEART and to be here if you need me:hug::wub: YOu so dont deserve this and im so SORRY for your pain and for your decisions you are faced with. I cant even imagine what it is like to go through what you are having to deal with. Just know that I CARE. HUGS RobXXXXXXXXXXXXXXXXXXXXXX

Jewelz
08-01-2009, 07:27 PM
Hey Rob

I'm new around here. Docs think I might have lupus. I've been dealing with something now for 4 years and was originally Dx'd with RA and given MTX and Humira and then Enbrel which did nothing for me and seeing that they think it's actually Lupus...I think the Humira and Enbrel could have done more damage. I'm living off pred right now. Current rheumy took me off plaquenil "too see what happens" ?YIPPIE?:wacko:

Anyway.... I have occipital neuralgia; like TN also rare. And at times, it sets off TN in me also - the TN only on the L side. It's CRAZY:hissyfit:pain. And nothing soothes it. I was also started on neurontin a little over a month ago - I am having problems with the med (making me too drunk feeling, fallen twice, sleepy...) Pharmacist said he doesn't think it's the drug for me. Too bad cuz while it hasn't stopped the occipital neuralgia (ON) or the TN, it certainly cuts back the number of attacks and the intensity of them. I'm looking at surgery too for my ON - it's more complicated than the TN surgery because they have to cut open the back of the head and it's 4 differ nerves (2 on each side) and they try to get to all for through 1 incision... The surgery for ON is still experimental too. Waiting too see if insurance will cover it - met with the surgeon 2 weeks ago. I get botox injections into my head which help the ON and TN also. You might want to ask your neuro about that too - pretty benign way to help! I get it in the forhead also because the ON nerves come up from the neck and all the way into the eyeball socket and I've got "twitching" eyelids from it too. Wouldn't be THAT bad but when they squiggle - my vision squiggles too...not great when driving down the freeway at 65mph.... Putting the botox in the forhead stops the eye twitching problem. The cosmetic aspect is an added bonus!:cute:

You are correct in the feelings of never imagining someone cutting into your head, to - "Come on lets get this done!...cut it open and get rid of this pain!!!!"

I get everything from electrical buzzing pain to lancing pain, shooting pain, stabbing pain and pain that I can't EVEN DESCRIBE it's so bad!!! I'm sure you do to. oooo, the last bout I had of it - left all my teeth on the L side only - hyper sensitive..OMG hurt to even brush my teeth - or even rinse with mouthwash! Thank God it only lasted a couple of days!!!!

Sorry this is sooooo long! I'm here if you want to talk!

take care and a big hug,
Jewelz

lucky7
08-01-2009, 08:11 PM
AWWWW, Jewelz, im SO SORRY for your pain as well:no: Its so sad that you have to deal with these issues as well. Plese know that im thinking of you and im hopeing for you to have better days ahead:wub::heart: XXXXX

DrinkofWtr
08-02-2009, 09:05 AM
So glad to know that you sister is there taking care of you, Rob. Yes, we all worry about you.

mortifiedat52
08-02-2009, 01:48 PM
dude! really sorry to hear about the TN attack.. i can only imagine the fear you must be living with... sending positive thoughts your way..

if it's any consolation, my former father in law is a neurosurgeon and i know quite a few people that have had brain surgery.. including my best friend (i've had to take her twice) and a former boss.. like most things medical, the technology has improved dramatically in recent years.. most of the people i've known that had brain surgery didn't really have much of a choice.. but i know that after the event, all of them would say they're glad they had it..
so, if it becomes a necessity for you, i think you have every reason to be confident that it will work...

mountaindreamer
08-02-2009, 02:39 PM
he rob,

just sending you a gentle hug. Hope you are having a decent weekend.....every day you are "in my mind and my heart"....

brandichi
08-02-2009, 07:35 PM
Oh my gosh, I'm so sorry to hear about what you went through, Rob. I can just imagine how awful that was, both when you had the episode and afterward. I'm so glad your sister was there to stay with you for a while, I'm sure that helped. Does she live close enough to come over if you feel you need someone there again? I live alone too, which I love most of the time, but not when I'm really sick.

It sounds like your doctor has a good plan for you, with the new medication now and surgery as an option if it becomes necessary. Hopefully, this was a one-time episode and you'll never go through anything like that again!!!!!!!!! And while I don't know anyone who has TN, I do know a few people who have had brain surgery, and there have been huge improvements so that it's much more routine than it used to be. (For the doctors, of course; it's never routine for the one going through it!!!)

I will keep you in my prayers, Rob. I do believe prayers make a difference, and you are important to all of us here. I don't post all that much, but I've seen how you are always so kind, so caring, and so supportive to everyone. You ARE very special!!! I pray that you move through this time gently and easily, with no more episodes, and with peace and healing.

rob
08-03-2009, 05:47 AM
Well, it happened again. This morning early. I called my sis, and she came over. I was getting my shoes on when it suddenly stopped. That's the way it was last time. It stopped almost as suddenly as it started. We didn't go to the hospital-yet. Right now I feel a residual burning sensation in my jaw and right side of my face. This time the pain lasted about 10 minutes. The first time it was for hours, so I guess I can be thankful it was alot shorter this time. It was just as painful though. This is not how I wanted to start my day, and the week. I'm sitting here waiting for it to come back, it's impossible not to think about it. Living in fear of pain sucks. I'm so sick of all this crap. Frigging SLE, MS, TN, what a bunch of screwed up stupid diseases and conditions. My life is run by a bunch of letters.

sits_inthe_corner
08-03-2009, 07:00 AM
OMG Rob, gentle hugs...I have thought of you and the others often....so sorry you went through such a painful experiance.

You are always on my prayer list....I'll have to pray harder.

brandichi
08-03-2009, 11:55 AM
Oh no..not again. :grumpy: You know, what you wrote is so true - that life is run by a bunch of letters, and it sucks!!!! I feel the same way, and it's the uncertainty of it all that gets to me, never knowing if I'll wake up feeling okay or in pain or if something new will happen to my body that I'm not expecting. Just know you're in my thoughts and prayers, and sending you gentle hugs. Has the burning eased up any today?

lucky7
08-03-2009, 01:51 PM
Oh DEAR ROB, I am SO SORRY this happened AGAIN and so SOON after the first attack. YOU are IN MY HEART as ALways dear friend. Please know that WE CARE SO MUCH and it makes US SO SAD to know what you have been going through. Heres what im going to do to YOUR PROBLEMS :samurai::spank::fist::pokey: Cuz i CARE and i really DO WISH i could make them go away. HUGS XXXXXXXXXX

SandyR
08-03-2009, 06:30 PM
Rob,

I am sorry to hear that you had another attack. Did you end up going to the hospital or the doctor??? What did they say or do for you??? I'm praying that they find you some relief real soon.

Sandy

rob
08-03-2009, 08:42 PM
Went to the hospital and was given a shot of I think, demerol. I really can't remember well. Worked partially. Got a prescription for oxycodone, heavy stuff. Feeling totally wacked out at this point. Everything is a bit hazy right now. The pain has returned again this evening but seems to be dulled down to a tolerable level as long as I don't turn my head too quickly or bite down/grit my teeth. What a day.

Angel Oliver
08-04-2009, 02:54 AM
Rob,

Im glad you got meds to try n ease the pain.We are here to support you and i really hope this eases n stops. I carnt imagine how you feel but just you rest up.

Love n hugs
Amanda.xxxxxxx

mountaindreamer
08-04-2009, 09:36 AM
hi rob,

how are you feeling today? i hope the meds are helping with the pain....yes, oxycodone is heavy stuff so be careful, my friend.

you remain in my thoughts and my heart.

Rastagirl
08-04-2009, 11:28 AM
Damn Rob....I'm so sorry it happened to you again. Gentle hugs to you for the awful pain and suffering you've been through. And for having to endure the fear and emotions that follow.

I hope you're able to get some rest today. Take it easy, and let me know if I can do anything to help you around here. As always, I'll keep my eyes open and let you know if any spammers try to step a foot inside.

You are in my thoughts and prayers today.....

with Love,

Lori

mountaindreamer
08-04-2009, 01:11 PM
hi rob,

montel williams is on oprah today, and he said he also has TN. he describes the pain as that like someone is jabbing a fork into his face in the area from the eye to the ear.

jfal
08-04-2009, 01:23 PM
Rob is the TN a consequence of MS? Or did you just hit the lottery?

I ask because sometimes bright sunlight makes me feels like someone has put a hot poker in my left eye. The pain usually goes away after a few seconds of darkness, although sometimes it leaves me with a headache..

dassar RN
08-04-2009, 01:23 PM
HI ROB,
Sending :hugs: hope you feel better soon.

Dassar RN

lucky7
08-04-2009, 01:52 PM
Im thinking of you Rob and i DO HOPE for BETTER days SOON dear friend. Gentle HUGS to you XXXXXXXX:cute:

narrowboatnutter
08-08-2009, 06:58 AM
sorry rob in my delay in getting back to you...ive had issues getting hold of my friend, she has moored her boat in an area of bad mobile phone signal and i only got hold of her yesturday....due to high phone bills we didnt chat long ( as shes on disability as well for a nervous condition ) but we are meeting up tomorrow for a catch up and lots of cake, so im gonna ask her about it all tomorrow...im going to ask her about her meds, whats worked for her in the past and how to deal with living with t/n .... is there anyting else you would like me to ask her....hang on in there....you will get though it....and we will all support you though it as well xxxx

Samo
08-08-2009, 07:19 PM
Hi Rob,

I am sorry to hear what you are going through. I hope you do not have to experience that pain again. Sending strenghth vibes your way!! Hugs, Samo

rob
08-08-2009, 08:37 PM
Hi Rob,

I am sorry to hear what you are going through. I hope you do not have to experience that pain again. Sending strenghth vibes your way!! Hugs, Samo

Hi Samo, I'll take all the good vibes I can get. It looks like I am on my way to another pain-free night. That's a very, very good thing. This TN stuff really has knocked the wind out of me. I can usually white knuckle most pain, but not this. I'm not one to be easily intimidated, in fact, that's an emotion that I do not allow myself to experience. But, this is different. I had a handle on most of the painful effects of both SLE and MS. I knew, for the most part, what to expect. I did not expect this though.

I know now that I have some subtle signs when the TN is going to flare, and I'm learning to pay attention to this, as well as have my pain meds, and the phone handy. It's yet another lifestyle change to deal with. You just have to do it.

I wish I could suddenly just show up in the world of Lupus, and MS, and shout in my loudest voice, that the life you knew, is now over. Make SLE and MS knock out about a million pushups as well as sprint up the tallest peak with me hounding their worthless asses the whole way, never letting up. See how they feel being totally exhausted, and wasted every day.

Narrowboat, don't worry about not being able to talk to your friend with TN right away. I understand the limitations involved (my onboard phone and wireless net access don't even work in the harbor here 50 yards from shore).

I just want to say, to all of the new people who have said hello, as well as my friends who I have known for awhile, thank you for your advice, your help, and your support.

Rob

kim,l
08-08-2009, 08:53 PM
dear rob i hope you start to feel a better soon and get a reprieve from the pain life deals us some heavy stuff sometimes and i know sometimes you just want to scream why me what did i do to deserve this i agree it sucks really bad but you my friend are a good hearted strong man and have been there with good wishes for me when i have been down so i have many hugs and good wishes for you and you are in my thoughts and prays love kiml

ButterflyRN
08-09-2009, 12:05 PM
Rob, hope you are feeling well today!

Saysusie
08-09-2009, 03:28 PM
Rob;
Were you able to have another pain-free night? How are you feeling today? The TN????
Holding you in my thoughts

Peace and Blessings
Namaste
Saysusie

abbasgirl
08-10-2009, 01:57 PM
Hey Rob. Just now catching up some more after being stuck in bed for a while. I feel so awful for you and wanted to add to our wehavelupus family hugs and concern for you. ((((((Hugs))))))

I read up on TN some months back trying to figure out what's is causing my head and eye pain... knew that's not it because my pain isn't that awful. I feel SO bad for you my friend! That is the nastiest kind of pain of them all!

I hope and pray they come up with some cures fast for this crap! I also wish they would hurry up and invent transporters so we can just beam over and be there for you in person. I'm glad you have a sister to count on.

SandyR
08-10-2009, 05:19 PM
hey, Rob! Hope you've been TN free lately. Was wondering how you're doing lately?
Sandy

rob
08-10-2009, 06:36 PM
Hi guys. I've not had a major bout of this TN for a few days now. I hope it stays that way. I've been learning that certain things can trigger this, like brushing your teeth a little too roughly, and eating or drinking things that are very hot or very cold. So, I'm taking the neurontin, and avoiding triggers, and it seems to be working.

The neurontin makes me really run down and high at the same time. Feeking a bit like a zombie, but it's better than the alternative. Hopefully I'll adjust to the med soon.

I have also learned that there is a non-surgical procedure called a gamma knife that uses low dose radiation targeted only on the problem area. It involves a bit of minor discomfort because they bolt this big thing to your noggin so the beam only hits the right spot. Beats the hell out of brain surgery. So I'm comforted that there is another option for me to consider if I need it.

And so it goes. Thank you all again for being concerned, and giving me a place where people really care. It helps so much.

Rob

SandyR
08-10-2009, 06:55 PM
glad to hear you have been feeling well the last few days. how does the gamma ray thing work? do you have to suffer a certain period of time before being eligible? Sounds like something from a sci fi movie.

mountaindreamer
08-10-2009, 09:10 PM
hey rob,

you would probably have a blast with that procedure....after all, you love all of those extreme science movies....just pretend you are the star of your own movie.

seriously, i am glad you are learning to live with this new obstacle that was thrown into your path. It is a shame that we have to keep adjusting our lives, just when we start to get comfortable with things.

anyway, hang in there, glad to see that you are not suffering like before. Strange/weird feelings in the mind are much better than the pain that you endured.

Angel Oliver
08-11-2009, 05:17 AM
Wow gamma rays to help the pain,maybe you should look more into this, sounds interesting and like you said....its good to have an option of another form of help.
Im seeing my Rheumi tomorrow n have so many questions,but will ask about what you said.
Hope when you wake you have another pain manageable day.I know the pills make you feel like a zombie,but in time the doctor will get the mixture just right for you.

Love n hugs Amanda.xxxxx

abbasgirl
08-11-2009, 02:47 PM
So glad you've not had more of that pain, but it must stink to have to watch how you brush your teeth and so on. (((((Hugs)))))

You're one brave dude, Rob... that option sounds scary to me. Anything that has to be bolted to the head scares me. But I'm glad it comforts you to have options. It sounds much better than surgery. I'm hoping and praying you won't have need of any of it though.

ButterflyRN
08-11-2009, 06:17 PM
Rob, glad that overall things are getting better for you (finding what can trigger it and the neurotin). Also glad to see they are going to try the gamma rays! Keep feeling well and keep us posted!

lucky7
08-12-2009, 01:08 PM
Oh Rob i am so HAPPY to hear that things are BETTER lately!!!! Im also HAPPY to hear that you have another option besides brain surgery! THAT deserves a BIG woo frickin hoo! You are ALWAYS in my heart ROB:hug::heart:

Angel Oliver
09-21-2009, 03:04 PM
Sending gentle hugs to you Rob as you are having a bad time with jaw pain and total body pain. I am glad you have someone with you to help you.I know you cannot use your hands so good right now,so dont worry,we will post, you just read it when you are feeling a little better.Glad you went to hospital and they checked you out,but sorry to hear the drugs have'nt touched the pain.Just rest,you know we all care and are here for you.

Love Amanda.xxxx

Bonita
09-22-2009, 05:43 AM
So sorry to hear of what you are going through and i am glad that your sister is a nurse and can help you with this you have been there for so many of us and we will be there for you in thoughts and prayers. Bonita

rob
09-22-2009, 07:42 AM
yes, i had another bout of t.n. again early yesterday. went to the hospital, got a dose of demerol, and as before, it did almost nothing. going to the neuro and my g.p. today to have some tests done. yesterday was nothing but pain. it did not let up. the burning in my head and face feels like fire on the inside.

i can't feel much of my face, it's like when you get novacaine at the dentist, but it doesn't kill any pain at all. my right hand is almost totally numb. been typing left handed with one finger. i can't believe how weak i am. just standing up is a huge effort. a few short years ago i could benchpress a respectable amount of weight. i could do a 2 mile run in 13 minutes. I was able to do one-handed pushups very easily. today, just walking takes every ounce of energy i have.

it probably does not help that i have not been able to eat any solid food. been having trouble chewing as it causes the pain in my head to become even worse. feel like i am just deteriorating. i see the way the few people in my life look at me. can't blame them, i don't recognize the ghost looking back at me in the mirror anymore either.

i have my sister here again to help out, and drive me around. hopefully i'll find some sort of relief or hope from the dr and neuro today. thanks for thinking of me, knowing you all are here really helps. gotta go get cleaned up and its off to my appointments.

rob

Saysusie
09-22-2009, 11:46 AM
Rob;
I noticed that you posted at 7:45AM and it is now 11:40AM in Calif. So, I just wanted to know how your neuro appointment went? Your prior post was so hopeful, especially the non-surgical procedure, and now this post where things have deteriorated.
You have been so strong and so comforting to all of us and I just wish that I could take away your pain, take away your sadness, and give you some comfort and bring you some peace of mind. I know that your friends and family love you very much and that their concerns and fears are written on their faces. This can be difficult, especially when you are aware of how much you've lost to this disease. This is so much for you to endure and every victory seems to be followed by an even more devastating loss.
There is not much that I can say to help you through this, except that you are so much in my heart and, no matter what, you will always be cherished by me. I wish that I could be there to help you, but please know that I am here for you!

Always
Saysusie

rob
09-22-2009, 02:51 PM
Rob;
I noticed that you posted at 7:45AM and it is now 11:40AM in Calif. So, I just wanted to know how your neuro appointment went? Your prior post was so hopeful, especially the non-surgical procedure, and now this post where things have deteriorated.
You have been so strong and so comforting to all of us and I just wish that I could take away your pain, take away your sadness, and give you some comfort and bring you some peace of mind. I know that your friends and family love you very much and that their concerns and fears are written on their faces. This can be difficult, especially when you are aware of how much you've lost to this disease. This is so much for you to endure and every victory seems to be followed by an even more devastating loss.
There is not much that I can say to help you through this, except that you are so much in my heart and, no matter what, you will always be cherished by me. I wish that I could be there to help you, but please know that I am here for you!

Always
Saysusie

the neuro upped my neurontin, again. i am rapidly reaching the upper limits of what is a safe dose. if the higher dose does not work, then it's on to more invasive treatment. one option is only mildly invasive, and the other, well, the other is about as invasive as it gets.

also, i am going to have another iv copaxone treatment later this week. i am feeling something i can only describe as sadness, and apathy. at this point i'm so tired that i just don't care. i have to wonder if this is all life will ever be for me. pain, tests, meds, more pain, more tests...

i'm not a quitter. i am more than willing to fight, but i need some sort of progress, some sort of benefit to show for my effort. I don't have that. for the first time in a long time, i feel a profound sense of hopelessness.

when i was a kid, i was constantly hounded by bullies. then one day i finally had enough of it, so i stopped, turned around, stood my ground, and punched "the leader" of this group right square in the nose as hard as i possibly could, breaking it. i suddenly had resolve, and not long after, my problems with these people ended.

i wish i knew how to punch all of these health problems in the nose like that. fighting an invisible enemy is frustrating. maybe i'll get up tomorrow and find some resolve to get by on. i'm not ready to quit, but i am getting awfully tired. gotta just keep on going the best i can i guess.

rob

SandyR
09-22-2009, 04:53 PM
Rob -
(((hugs))) :grouphug: Rest up and let your body do some healing right now so you can give MS a good 1, 2 combo!
Sandy

mountaindreamer
09-22-2009, 05:32 PM
hi rob, you are one of the most interesting and compassionate people that i have ever had the pleasure of associating with. I am so sorry to hear of your continued struggles. the uphill fight wears us thin, and it becomes more difficult to keep reaching for the next step. Your sister is a blessing, and i know that she and your family are very worried about you. Please know that we are thinking of you and sending you hugs of support. Once again, i wish that we could all get together and gently surround you in a circle of love.

debbie-b
09-23-2009, 08:39 AM
Rob,

I am so sorry, that you have to go through all this crap again. Sending you some good thoughts and gentle hugs.

Debbie

lucky7
09-28-2009, 11:56 AM
Oh Rob, i am so sorry! Ive been away so i wish i could have responded SOONER! You are in my HEART:cute: By the way, BULLIES? Come on, WHAT did THEY have to bully YOU about! You are GREAT! They were just JEALOUS!!!!!! Thats what THEIR problems were! I would have given them a sock em 1~2 if i was around when it happened to you!:nutkick:

Samo
09-29-2009, 12:06 PM
Hey Rob,

I am sorry to hear that these "issues" are still hanging around. What the heck!? Time to get your boxing gloves on!

From your previous posts I gather that you are NOT a quitter and you know, that is half the battle. As for your feelings of sadness and hopelessness, you have to acknowledge them because considering what you are going through, you are ENTITLED to have these feelings. The difference lies in that because you are not a quitter, you will get through this.

You are right that this is often a fight against an invisible enemy and frustration comes with the territory.

Whenever I end up in the hospital I wonder if this time I will have the strength to emerge, and I will admit that at times I am stretched so thin that all hope is ALMOST gone.

Keep up the shadow boxing, you WILL get a hit in! :buttkick: